StruggleStreet; Effexor withdrawal & reinstating mess + Mirtazapine confusion

[StruggleStreet]

I have been on Effexor XR for 20 years. About 10 years ago I questioned why I was still on it (since I was no longer struggling with depression) and tried to come off... I managed to come down from 300mg to 150mg before giving up - deciding I'd rather stay on it than endure the withdrawals.

 

I had been taking that 150mg dose for about another decade until I was diagnosed with ADHD in Feb of 2024.  The psychiatrist who made the diagnosis said I could absolutely-definitely-under-no-circumstances even TRY an ADHD med unless I came completely off the Effexor (the risk of serotonin syndrome apparently outweighing my previous difficulties coming off Effexor). 

 

So I tried... 

From 150mg, I dropped to
112.5mg for 4 weeks
75mg for 4 weeks
37.5mg for 8 weeks
18mg for 2 weeks
11mg for 2 weeks
7mg for 4 weeks 

 

(now that I am aware of the need for hyperbolic tapering I cringe at that schedule...)

 

2 days after dropping to 7mg the withdrawal symptoms went from just being nausea/headaches/vision changes/insomnia to a full-on CNS melt-down: nausea, vomiting, complete loss of appetite and inability to swallow food, constant diarrhoea, chest pains, muscle aches, painful pounding heart palpitations, an unbearable restlessness /agitation in my neck, shoulders and arms (akathesia?), and waves of hot flushes... the extreme physical discomfort caused distress to the point of being consumed with thoughts of not wanting to be alive anymore, and making plans to end my suffering. 

 

While suffering these symptoms, which onset SUDDENLY (all in one day), but persisted for days, and then weeks, I saw my GP (prescribed 1mg Ativan 3 x day for as long as I needed "don't worry, you won't get addicted if you're taking it for the right reason"), the local mental health team, the doctor on call in the hospital emergency department and a psychiatrist - none of whom had a clue how to help me, or even considered that my Effexor taper could be the cause of my symptoms. 

 

Thankfully, the psychiatrist stopped the Ativan before it became a long-term issue, and prescribed a bunch of things like Ondansetron that made life more tolerable. He also prescribed 15mg of Mirtazapine for mornings, and 7.5mg for evenings. Unfortunately I did not have the presence of mind during this appointment to ask what he prescribed it for, and whether it was, like Ativan, something that would have an immediate effect and I would be only need to take while symptomatic for the next few days/week, or if it was a new (for me) long term medication like Effexor.

 

3.5 weeks after all these symptoms had suddenly kicked-off, the day after starting the Mirtazapine, I started to have periods of a few hours or more at a time of being *OK.* 

 

That evening my aunt texted me:  "I suppose I'm trying to work out what happened between July when you seemed to be doing well, and August when you weren't. Did it all begin with changing meds?"

 

Her question prompted me to scroll back through my messages to reread a Guardian article a friend had sent me months previously about Dr Mark Horowitz: "Australian doctor who almost died writes landmark guidance on how to safely stop using antidepressants"

 

My eyes were opened.

 

I read a bunch of stuff about Antidepressant Discontinuation Syndrome online, and went and spoke to my pharmacist. He knew about the Maudsley Deprescribing Guidelines and even printed me a copy of the pages on Effexor to show my GP.

 

I met with the psychiatrist and my GP again and was given permission to start retaking 75mg of Effexor immediately (which, now that I've read a bit about reinstating, may have been too heavy handed). 

 

At the same time, I questioned what needed to happen with the Mirtazapine - was it still needed? If not, how quickly could I come off it? At this point I'd only been on it for 1 week, so I was hopeful I could drop it cold-turkey as I was reinstating the Effexor. The psychiatrist, however, wanted me to stay on it for at least another 2 weeks, then drop the morning dose for 2 weeks, then drop the evening dose. 

So that was the plan...

 

I vastly improved within days. I was 100% improved within 2 weeks - all physical and mental/emotional symptoms GONE.

 

When the day came to drop the morning dose of Mirtazapine (15mg), I was anxious as heck - I had my life back, I was scared to change ANYTHING in case the wheels fell off again... I spoke to my pharmacist and he suggested I taper off the Mirtazapine a little slower, just for peace of mind. So instead of dropping the full 15mg in the mornings, I went to 7.5mg for 2 weeks (plus the 7.5mg at night). Then went to a quarter of a tablet (approx 3.75mg) in the morning for 2 weeks (plus still on 7.5mg at night). 

 

The day I was planning on dropping the last of the morning dose of Mirtazapine was the morning of Thursday, Oct 24th, 2024. But, because I woke up feeling *not good* I again took 3.75mg, the same as usual. 

 

Upon waking I experienced a milder version of the "hell weeks" - waves of heat, loss of appetite, diarrhoea, difficulty eating, feeling weak/trembly, neck/shoulders aching and feeling agitated / uncomfortable (akathesia?). I felt progressively better throughout the day though; I had no trouble eating dinner and had zero physical symptoms by bed time. 

 

The next day, Friday, started the same - but I became increasingly distressed during the afternoon to the point of wanting to end my life again. I took an Ativan and phoned my GP. She said we might need to make some medication changes, but that she'd prefer those changes be managed by a psychiatrist. She directed me to present to the Hospital Emergency Department for that to happen. I went, but all they did was take bloods and leave a note for the mental health team to call me the next day.

 

Saturday was similar again, except that I tolerated the physical discomfort better (or it wasn't as bad?). I didn't get as distressed or feel suicidal. I was desperately hopeful that whatever had been going on, was done...

 

However Sunday was basically a repeat of Friday; horribly uncomfortable morning which resulted in becoming  increasly emotional/distressed and desperately wanting to die. 

I presented to ED again (no Ativan first, this time) and they put me on a telehealth call with a mental health worker who said the best course of action would be to go to the next town over (100km away) and admit myself voluntarily to the Acute Adult ward. She assured me that there would be an experienced TEAM of doctors and psychiatrists who's job it is to fine tune these type of medications in the safety of a ward. 

 

The psychiatrist I saw the next morning, Monday, asked what my main issue/complaint was and I said the combination of physical symptoms, because that extreme discomfort always comes first, causes the distress, which escalates to feeling suicidal. She said they're not here to treat physical symptoms. 

 

When I explained that I believed the physical symptoms I was experiencing are Antidepressant Discontinuation Syndrome, she replied that in her 20 years of psychiatry she's had plenty of patients come off Effexor, and whilst some have had symptoms, none were so bad that they required hospitalisation. 

 

When I asked her to confirm she didn't think my concerns were related to Antidepressant Discontinuation Syndrome, she reiterated that she believed my issue was a complex interaction between my biology, personality, environment, past experiences etc, and that rather than being an inpatient on the Acute Adult ward, I instead needed long-term psychological therapy.

 

Then she asked me what I wanted to do re medications; I said that I was willing to do whatever was NEEDED. This was apparently the wrong answer - I was supposed to *know my body* and therefore know what drugs to increase / decrease and by how much. Do I WANT to increase the Effexor? Do I WANT to increase the Mirtazapine? I had agreed to being admitted and treated as an inpatient so that somone MORE EXPERIENCED than my GP could be making those decisions, and shes asing ME!!??

 

I sincerely hope I have successfully communicated how abrupt the onset of these symptoms was, and how successfully they SEEMED to have been treated by, initially the introduction of Mirtazapine, but also, having reinstated the Effexor at 75mg

 

6 weeks of Effexor at 75mg = all good, then suddenly.... !!!????? (For the record, there was no precipitating life stressor/event)

 

Is it possible that reinstating to 75mg wasn't enough? If that's the case, would my body be fine for 5 weeks and then suddenly NOT fine!? Or would it have been apparent immediately that 75mg wasn't enough? 

 

The current treatment plan is to increase to 112.5mg of Effexor for 3 days (tomorrow will be the 3rd day at this increased dose), then increase again to 150mg.

 

Considering what I've now read regarding reinstating as little/slowly as possible - I'm thinking I should ask to stay at 112.5mg for longer than 3 days?

 

Thoughts on the Mirtazapine? Is it possible that I had successfully stabilised the Effexor, and that this second round of symptoms was triggered by my tapering off the Mirtazapine? Despite only having been on it for a couple of weeks? If that's the case, should I be asking to bump that back up INSTEAD? 

 

In case it's pertinent regarding which drug might be at fault, the symptoms these last 6 days have been consistently worse earlier in the day, particularly upon waking. Also, I have consistently felt completely better by bed time each day. 

 

Hopeful that some of you have had relevant experiences and are willing to share your wisdom xx

[Jane318]

Greetings @StruggleStreet and welcome to SA!  We are a community of volunteers providing peer support in the tapering of psychiatric medications and their associated withdrawal syndromes. 

 

Thank you for completing your signature. 

 

I am sorry for all that you have endured these past several months.  From from narrative, I see that after researching about Antidepressant Discontinuation Syndrome (AD withdrawal) and the proper way to discontinue antidepressants, you realize that you tapered down Effexor much more quickly and then reinstated at a dose higher than we would advise.  Both actions are known to cause severe withdrawal symptoms although onset may be delayed by days or weeks or even months in some cases.  Further, there may be interactions between Effexor and Mirtazapine and/or Valdoxan that is causing your problems.

 

All the symptoms you describe can be due to AD withdrawal.   These symptoms tend to appear in a pattern referred to as "Windows and Waves Pattern of Stabilization."  This is why you got knocked sideways again after a period of relative calm.

 

Your CNS has been cycled up and down repeatedly over the past few months.  Your body needs a chance to rest and stabilize.  So if I were you, I would not make any more changes in drugs or dosages for the foreseeable future.   Once you stabilize, we can help you come up with a plan to get off these drugs, slowly and safely.

 

As you take time to let your body stabilize, it’s important to keep tabs on your symptoms.  This will help you identify your windows and waves and reveal your progress, which is encouragement we need!  You can use the following list of typical withdrawal symptoms as a template for a journal, if you wish:  Daily Checklist of Antidepressant Withdrawal Symptoms (PDF).

 

You may choose to also track your foods and activities to identify things that trigger symptoms as well. 

 

We recommend only two supplements here at SA, magnesium and omega-3 fatty acids.  So if you decide to try a supplement, even those we recommend here, start with a very low dose.  If you tolerate it well, you can increase the dosage slowly over time.  I recommend eating nutritious, whole foods - Good food provides the building blocks for healing.  Conversely, processed / junk foods contain a lot of stuff that may irritate your sensitized body.  We do encourage people who are tapering to avoid caffeine, alcohol, and recreational drugs.  Many prescription and OTC drugs can cause problems too and should be avoided as much as possible. 

 

Here are some threads that will further your understanding:

 How long does it take to stabilize after reinstating or updosing?

 Hypersensitivity and kindling

About going off mirtazapine plus venlafaxine (Effexor) aka "California rocket fuel"

Drug Interaction Checker - Check for drug interactions here.

 

Once you are stable and ready to resume tapering, we recommend the hyperbolic tapering approach.  Check out the several links under the heading "I’m looking for information about tapering a psychiatric drug. Where should I start?" on the SA.org Home Page.

 

It is important that you start working on some non-drug coping mechanisms now to maximize your chances of getting off of these drugs and staying off of them for good!    We have many threads on how to cope with symptoms – I encourage you to check out the various forums / links on the SA.org home page.

 

This is your introduction topic.  Each member gets one intro topic- please post updates and questions here, in this thread.

 

Do explore the rest of the forum – there is a lot of great information here.  Be sure to read “About SurvivingAntidepressants.org,” which has good information about how to use / search the site: https://www.survivingantidepressants.org/forums/topic/54-about-survivingantidepressantsorg  

 

Also, feel free to read and comment on the intro threads of other members.  This is how you build a community of people who understand what you are dealing with.   It is so helpful to connect with others who are experiencing the same things.

 

Please know that with time your body will heal!  Keep hope alive

 

I look forward to following your journey, and helping out in any way I can.

Edited October 31, 2024 by Jane318

[StruggleStreet]

@Jane318

Thank you so much - I look forward to checking out all those links to get a better idea of whats going on.

 

In case it was not clear in my original post, I had no knowledge of hyperbolic tapering until AFTER the wheels had fallen off my wagon (so to speak). The tapper I did was dictated purely by convenience at first (reducing by the next lowest dosage available), and but then I stayed at 37.5 for 8 weeks because I was still sooo nauseas every day, but then I got some bad advice from my GP about continuing to reduce anyway, as long as I could tolerate the symptoms... which I interpreted to mean that it was OK/SAFE to keep reducing despite still having symptoms... 🙄🙄🙄 Such a mess!

 

 

 

[Jane318]

@StruggleStreet - Many of us have discovered that most healthcare providers are CLUELESS about how to get off ADs safely and patterns of withdrawal!  I also started my taper before learning about hyperbolic tapering.  In my case, I thought I was going slowly, but I wasn't, and it caught up with me.  However, our brains and bodies are designed to heal, so I try my best not to dwell on on the past - with time, patience, and good support, you will get past this mess!  Be sure to reach out with questions you may have about the reading assignment!  Best wishes.  

[zanti]

Hi! I'm also on Effexor XR and mirtazapine and I've read everything you wrote and your signature.

 

My only and best advice for you right now would be, try to find a balance and stability with your meds.The worst thing that wrecks havoc in our brains is constant dose changes, switches, withdrawals.We do not need those.We need stability and a safe ground.After we reached that, we need to inform ourselves very very good and maybe start tapering 5 to 10% per month or slower, in cases like mine and yours ( 10-20 years of SSRIs ).

 

I'm here for you and we will get better together.Always look for the positives even in the saddest of the situations.

 

PS: In the absence of life threatening or severe side effects, quick is not the answer.Proper withdrawal from these powerful drugs should take months-years.

[StruggleStreet]

Update + Seeking further advice...

 

I am still being treated as an inpatient at a mental health unit (voluntarily).

 

Reminder that the whole reason I attempted to discontinue taking Effexor was so that I could try an ADHD medication... When speaking with the treating psychiatrist at this facility (different to the one mentioned in my first post) he mentioned that he has other patients that are taking both Effexor and ADHD meds at the same time with no issue. Whilst prescribing ADHD meds is not the role of this inpatient unit, he suggested that it would be possible to do a one-off trial for 24hrs whilst I'm on the ward, so that any concerns about serotonin syndrome could be closely monitored. The proposed date for this trial would be within the next day or two.

 

My question / concern is this - I have not allowed any more changes to my dosages if Effexor (112.5mg), Mirtazapine (3.75mg + 7.5mg), or Valdoxan (50mg) since October 29th 2024. I have been symptom free since October 31st. Am I running the risk of destabilising everything / triggering discontinuation symptoms again if I proceed with this 24hr ADHD medication trial? It's such a valuable opportunity - if it turns out it's safe (no seritonin syndrome) then I won't EVER have to come off the Effexor! Additionally, if it turns out it doesn't work for me / makes no difference to my ADHD symptoms, then I'll also know it's not worth coming off of Effexor for it long term. 

 

Hopeful + terrified all at once...

[Jane318]

@StruggleStreet - Glad to hear you are holding at current doses and have been symptom free since October 31! 

 

In response to your question about whether taking an ADHD drug will trigger symptoms for you.   First, you need to know that SA never recommends taking drugs to deal with psychiatric challenges.  Our mission here is to help people who want to get off of these drugs do so.  So we are never going to encourage you to add another drug to the cocktail you are already taking.  Second, it isn't possible to predict with any certainty whether adding an ADHD (or any) drug will create more problems for you or not.  Each person is different.  But as a first step, if I were you, I would research the specific drug and check its possible interactions with the other drugs you are taking at drugs.com.

[Yichin]

Have you read about the long term side effects of ADHD drugs? 

[StruggleStreet]

@Yichin No - I wasnt aware there were any!? The psychiatrist said they are super short acting - he said even if I did have negative side effects the drugs wear off in about 5 hours?

 

- Do you have suggested readings? 

[FindRest]

People can have a hard time when they miss a dose of their ADHD drugs and many become very dependent on them. This in addition to all of the symptoms mentioned on drugs.com. It has a withdrawal syndrome of its own.

 

IMO, it’s never a good idea to take a new psychiatric drug (including ADHD drugs) when we are trying to stabilize after a previous taper attempt. You are still in the stabilization period which can take several months or even longer. You have a high risk of upsetting the cart now should you decide to try the adhd drug. If things go south, you won’t know if it’s because you have destabilized your cns again, or whether it’s some side effect of the new med. Also, there is no timetable to know when serotonin syndrome will pop up if it does. It can be after the first dose, the 10th, 30th, etc. 

Edited November 11, 2024 by FindRest

[Yichin]

Just google. It’s not hard to find. 

[Jane318]

23 hours ago, StruggleStreet said:

Do you have suggested readings? 

I just finished reading this eye-opening book by Robert Whitaker, which includes discussion of ADHD drugs:  https://a.co/d/j3fi1J5

[StruggleStreet]

Seeking clarification regarding the "windows and waves" pattern of recovery.

 

I am still being treated in an inpatient mental health unit, but am most likely facing discharge tomorrow.

 

When discussing with my treating psychiatrist and doctor how I felt about leaving the unit, I mentioned that I am fearful of being alone when the next "wave" of discontinuation symptoms comes (since they are really distressing and include strong SI). The psychiatrist was adament that I would not experience any future "waves" of discontinuation symptoms (physical or psychological) because there are no more changes to my medications planned.  

 

TL;DR of my situation to save you re-reading my previous posts:

- March through to August 2024 tappered too fast from 150mg to 7mg of effexor which triggered 4 weeks of physical and psychological hell (SI)

- reinstated to 75mg effexor + added (15mg + 7.5mg) Mirtazapine... symptoms resolved 100% and stayed that way for 5/6 weeks (during which I began to taper off the Mirtazapine which I'd only been on for 3 weeks)

- after enjoying 5/6 weeks symptom free, thinking it was all done and dusted, I experienced a sudden onset of symptoms again (possibly triggered by tapering off the Mirtazapine?)

- this bout of symptoms lasted 1 week. Each day was worse in the mornings but resolved by each evening. During this week I was admitted to inpatient unit due to akathesia induced distress and SI

- day 3 of admission my Effexor dose was increased from 75mg to 112.5mg

- day 5 of admission symptoms stopped completely 

- day 16 of admission (13 Days since meds were changed and 11 Days symptom free) it was discussed / pencilled in that I would be discharged 3 days later... 

- within an hr of learning of this decision, my symtoms - physical and psychological (SI) re-emerged...

 

Symptoms abated 24hrs later. 

 

I assumed the stress of going home / change in circumstances potentially triggered a "wave" of discontinuation symptoms - since both the physical and psychological (SI) symptoms mimiced my experience from the acute phase of discontinuation. 

 

However my treatment team believe this episode of symptoms to be unrelated to my previous 2 bouts of discontinuation syndrome (since there had been no med adjustments in the last 2 weeks), and that my symptoms were *just anxiety* 

 

Can anyone comment? Is the "windows and waves" pattern of recovery only relevant to those who have either gone cold turkey, or who are in a taper? Or is it possible / likely also for those of us who have reinstated? 

 

I am astonished by the on/off nature of these symptoms, collectively - its like being 2 different people... struggling to wrap my head around how I can be so consumed with distress and SI one minute, and perfectly fine the next... definitely doesn't resemble any of my previous experiences of *just anxiety* 

 

[Emonda]

I like the book, Jane318 mentioned.

 

This is another good one: https://www.amazon.com/Prozac-Backlash-Overcoming-Antidepressants-Alternatives/dp/0743200624

[KimMk]

Hey! I’m on effexor too and have a few failed tapers. To me it sounds like reducing mirtazapine destabilized you. What you described indeed windows and waves. The wisest thing at this point is not make any more changes whatsoever for several months and give your body a break. Having windows already is a great sign! 

[Jane318]

How are you doing @StruggleStreet?  Wishing you the best for the holidays.